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Leigh syndrome is a terrible disease. In the worst cases, it emerges shortly after birth and claims one major organ after another. Movement becomes difficult, and then impossible. A tracheotomy and feeding tube are often necessary by toddlerhood, and as the disease progresses, lungs frequently have to be suctioned manually. Most children with the condition die by the age of 5 or 6.

Leigh syndrome is one of hundreds of so-called mitochondrial diseases, which are caused by defects in the specialized cellular compartments — called mitochondria — that produce 90 percent of the body’s energy. These disorders are rare; about 1,000 to 4,000 babies in the United States are born with one every year. But they are devastating. They can result in grave impairment of nearly any bodily system. They are largely untreatable, uniformly incurable and very difficult to screen for.

Some might also be preventable. Scientists have devised a procedure called mitochondrial replacement therapy (M.R.T.) that involves transplanting the nucleus of an affected egg — mitochondrial diseases are passed down from the mother’s side — into an unaffected one whose nucleus has been removed. (The procedure is sometimes called “three-parent I.V.F.” — in vitro fertilization — because mitochondria contain a minuscule amount of DNA; any resulting embryo would have mitochondrial DNA from the donor egg and nuclear DNA from each of its parents.)

…continue reading ‘This Editorial Is Not About Designer Babies’

Thumb Image via NY Times – Angie Wang

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New York Times Opinion

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